Thanks for that link, dr holtorf has interesting view on hormonal side of cfs and realise its a multi system problem going on. I think even when others have treated what infections they have they still may need further treatment to sort out the HPA axis.

Have you ever checked your bp many times during the day? I did that lately and noticed that i have quite large variations in Bp. For example 84,88,91,96,10,84,87,90,74,77,81mm Hg...Goes on like that. Would you think these variations are normal?Thanks.

Have you ever checked your bp many times during the day? I did that lately and noticed that i have quite large variations in Bp. For example 84,88,91,96,10,84,87,90,74,77,81mm Hg...Goes on like that. Would you think these variations are normal?Thanks.

Click to expand...

A variation of 10 points i wouldnt worry as it could just be the machine/cuff but you have some that are 20 points which is a big variation, also bp under 100 is considered low and could make u feel light headed etc especially if getting up quick from lying or seated position. I would look into some way of atleast getting your systolic bp to 100 and see if u feel better.

Have you ever checked your bp many times during the day? I did that lately and noticed that i have quite large variations in Bp. For example 84,88,91,96,10,84,87,90,74,77,81mm Hg...Goes on like that. Would you think these variations are normal?Thanks.

Click to expand...

Hi Cindi,

My systolic ranges as well, but not as much as yours. I fluctuate between 80 - 95. I can't tolerate any of the medications to raise BP.

People are mentioning pregnenolone cream on this thread; my daughter has been advised by Sarah M to take hydrocortisone 1% cream daily but it is having no effect and I'm wondering if we should try pregnenolone?

pregnenolone is an upstream hormone, so other hormones are made from it like cortisol, dhea, progesterone etc where cortisol/hydrocortisone is a down stream hormone. Pregnenolone can help but may take abit longer. Generally the up stream hormones are safer and arent supressive as much as down stream hormones. The only way to know if something is going to help is to try it. Maybe she should mention it to her doc, could possibly use both together.

A variation of 10 points i wouldnt worry as it could just be the machine/cuff but you have some that are 20 points which is a big variation, also bp under 100 is considered low and could make u feel light headed etc especially if getting up quick from lying or seated position. I would look into some way of atleast getting your systolic bp to 100 and see if u feel better.

Update on me - I promised updates on my adrenal treatment from Clymer but was unable to continue because I was feeling so horrible. I think I'm lucky to be alive. This is going to be a long post...

My cortisol was already high from adrenal cortex extract prescribed from my local naturopath. He refused to retest me because I was only taking 3/8 of one pill, not 5 pills like they prescribed. First mistake.... Then I went to Clymer so I could at least get retested. My test showed high cortisol (previously flatlined low).

Dr. Neville prescribed a different sort of adrenal cortex extract that was supposed to lower cortisol. That was going ok, so then I started working on pregnenolone to raise DHEA. Second mistake..... Apparently pregnenolone can convert into DHEA or in some people it converts into more cortisol. Apparently that's unlucky me because the pregnenolone was overstimulating. I played around with it for several weeks, stopping and letting things clear out when it was too much, then restarting at a lower dose trying to find a dose I could tolerate. I think I was fascinated with it because it was helping to regulate my sleep cycle. My sleep cycle had been moving forward an hour a day for years. Anyway, third mistake....

The last time I tried pregnenolone, the nervous feeling never went away. Dr. Neville told me to wait for I think a week or two to let the pregnenolone clear out, then start on Seriphos to lower the cortisol. This went on for 6 weeks, which I reported on here.

Instead of getting better, things kept getting worse. It was like my whole nervous system had exploded.

On top of feeling like I had drunk 1000 pots of coffee, overstimulated, nervous, etc. I started having fits of agitation, shaking and moaning throughout the day, horrible acid reflux. Horrible problems sleeping and eating. I had to sleep in a recliner to at least get some kind of sleep. I was waking up a thousand times a night with my heart racing and pounding and more acid reflux. Then I started having flashes of suicidal thoughts.

That's when I started calling all my doctors for help. I asked for Xanax or something to calm me down. My doctors warned me of how addictive that is (which I already knew, having been on and off it a few times, another horrible experience, but I was desperate). They wanted me to try to work it out naturopathically. My local naturopath prescribed all kinds of calming supplements and Prilosec. The calming supps sort of helped, but not enough. The Prilosec was doing nothing. I ended up going to the ER and getting clonazepam and Pepsid. My docs also recommended getting back on Zoloft which I had discontinued about 9 months earlier and was doing fine without until the high cortisol episode.

I was feeling so horrible, it was recommended that I find a psychiatrist instead of getting psych meds managed through my GP or CFS specialist. There is a severe lack of psychiatrists in this town so the wait is at least 6 weeks. So I kept suffering with all the aforementioned problems. My GP was helpful in getting me on another proton pump inhibitor called Dexilant which works both day and night. He had me do an endoscopy - more stress. My results came back (of course) normal. My sleep was so horrible he wanted me to a sleep study. I talked to the sleep doc, but felt too terrified to do an actual sleep study. My naturopath prescribed taurine which helped calm down the heartbeats at night so I could start to sleep a little better.

I finally got to a nurse practitioner for psychiatric medication management and I started taking the clonazepam regularly and started on a teeny amount of Zoloft. For some reason, when starting on Zoloft this time I could only tolerate 12.5 mg increases (1/2 of the smallest pill they make), so to get on a therapeutic dose was going to take 2 months. Somewhere in here, I had stopped most of the naturopathic supplements because I could barely eat and couldn't get the pills down. But again the clonazepam and Zoloft were sort of helping, but not enough. More weeks of suffering.

So I've gone from August to Thanksgiving feeling like I'm going to die or kill myself, shaking, moaning, nervous, anxious, horribly sleep deprived, losing weight,etc. I was unable to watch any tv or do anything to entertain myself and pass the time. In fact, I had developed a severe sensitivity to noise, including tv, people mowing outside, etc. I mostly laid in my recliner with earplugs in, and stared blankly at the ceiling, and did a lot of praying. I would also like to add that I had great support from my family, serving me food and pills which I couldn't get myself, taking time off work to take me to doctors appointments and paying for added medical expenses. I would not have made it without them.

In early December I decided to restart all the calming naturopathic stuff along with the psych meds (checked with my naturopath first to make sure this was ok). Within a week all the agitation had stopped and I was starting to feel more comfortable. I still had no energy to speak of and wasn't sleeping well, so I worked with my naturopath on some sleep supplements. Once I added in melatonin, I started to sleep better and feel more rested and a little energy started coming back. It was a happy day when i could get my own plate of food together (this is from already prepared food, not cooking it myself).

I have continued to feel more and more comfortable and be able to do more things, although I am not back to my baseline of 25%. I would say I'm about at 15%. I'm sleeping about 14 hours a day. I am guessing that I'm in some kind of healing phase right now, so I'm being very careful about pacing and not pushing things. I did a little trial of driving to the store for some stamps. This is the first time I've driven by myself since August. The whole trip was 15 minutes and believe me, that was plenty.

Sooooo......for anyone looking for advice on adrenals. I would suggest that if you want to do cortisol and DHEA supplementation that you keep retesting often to make sure things don't get too high. But I've researched things more since this episode and found out that we probably don't really have adrenal fatigue in the classic sense and probably have no business doing these kind of supplements.

According to Rich Vank, the problem lies upstream with the hypothalmus and pituitary, which don't have enough glutathione to make the signals the adrenals need to receive to do their job. In other words, the adrenals are perfectly fine, which is why if you try to supplement them directly you could make them go too high. Then once you stop supplementation they will eventually crash back down again.

I think this makes perfect sense in my case. I've done the testing and I do have a methylation cycle block. So when I get back to my baseline and am stable for awhile (maybe in 6 months?), I plan to work on methylation. I've already had some success with it on a small level. The problem will be balancing it with discontinuing meds especially the Zoloft, because once you start raising glutathione you will start making serotonin.

The one good thing that's come out of this (outside of a lot of spiritual growth) is that I currently have a normal day/night sleep schedule for the first time in years, which I'm enjoying very much. I would expect this to go away as my adrenals crash again, but maybe I will be happily surprised.

Update on me - I promised updates on my adrenal treatment from Clymer but was unable to continue because I was feeling so horrible. I think I'm lucky to be alive. This is going to be a long post...

My cortisol was already high from adrenal cortex extract prescribed from my local naturopath. He refused to retest me because I was only taking 3/8 of one pill, not 5 pills like they prescribed. First mistake.... Then I went to Clymer so I could at least get retested. My test showed high cortisol (previously flatlined low).

Dr. Neville prescribed a different sort of adrenal cortex extract that was supposed to lower cortisol. That was going ok, so then I started working on pregnenolone to raise DHEA. Second mistake..... Apparently pregnenolone can convert into DHEA or in some people it converts into more cortisol. Apparently that's unlucky me because the pregnenolone was overstimulating. I played around with it for several weeks, stopping and letting things clear out when it was too much, then restarting at a lower dose trying to find a dose I could tolerate. I think I was fascinated with it because it was helping to regulate my sleep cycle. My sleep cycle had been moving forward an hour a day for years. Anyway, third mistake....

The last time I tried pregnenolone, the nervous feeling never went away. Dr. Neville told me to wait for I think a week or two to let the pregnenolone clear out, then start on Seriphos to lower the cortisol. This went on for 6 weeks, which I reported on here.

Instead of getting better, things kept getting worse. It was like my whole nervous system had exploded.

On top of feeling like I had drunk 1000 pots of coffee, overstimulated, nervous, etc. I started having fits of agitation, shaking and moaning throughout the day, horrible acid reflux. Horrible problems sleeping and eating. I had to sleep in a recliner to at least get some kind of sleep. I was waking up a thousand times a night with my heart racing and pounding and more acid reflux. Then I started having flashes of suicidal thoughts.

That's when I started calling all my doctors for help. I asked for Xanax or something to calm me down. My doctors warned me of how addictive that is (which I already knew, having been on and off it a few times, another horrible experience, but I was desperate). They wanted me to try to work it out naturopathically. My local naturopath prescribed all kinds of calming supplements and Prilosec. The calming supps sort of helped, but not enough. The Prilosec was doing nothing. I ended up going to the ER and getting clonazepam and Pepsid. My docs also recommended getting back on Zoloft which I had discontinued about 9 months earlier and was doing fine without until the high cortisol episode.

I was feeling so horrible, it was recommended that I find a psychiatrist instead of getting psych meds managed through my GP or CFS specialist. There is a severe lack of psychiatrists in this town so the wait is at least 6 weeks. So I kept suffering with all the aforementioned problems. My GP was helpful in getting me on another proton pump inhibitor called Dexilant which works both day and night. He had me do an endoscopy - more stress. My results came back (of course) normal. My sleep was so horrible he wanted me to a sleep study. I talked to the sleep doc, but felt too terrified to do an actual sleep study. My naturopath prescribed taurine which helped calm down the heartbeats at night so I could start to sleep a little better.

I finally got to a nurse practitioner for psychiatric medication management and I started taking the clonazepam regularly and started on a teeny amount of Zoloft. For some reason, when starting on Zoloft this time I could only tolerate 12.5 mg increases (1/2 of the smallest pill they make), so to get on a therapeutic dose was going to take 2 months. Somewhere in here, I had stopped most of the naturopathic supplements because I could barely eat and couldn't get the pills down. But again the clonazepam and Zoloft were sort of helping, but not enough. More weeks of suffering.

So I've gone from August to Thanksgiving feeling like I'm going to die or kill myself, shaking, moaning, nervous, anxious, horribly sleep deprived, losing weight,etc. I was unable to watch any tv or do anything to entertain myself and pass the time. In fact, I had developed a severe sensitivity to noise, including tv, people mowing outside, etc. I mostly laid in my recliner with earplugs in, and stared blankly at the ceiling, and did a lot of praying. I would also like to add that I had great support from my family, serving me food and pills which I couldn't get myself, taking time off work to take me to doctors appointments and paying for added medical expenses. I would not have made it without them.

In early December I decided to restart all the calming naturopathic stuff along with the psych meds (checked with my naturopath first to make sure this was ok). Within a week all the agitation had stopped and I was starting to feel more comfortable. I still had no energy to speak of and wasn't sleeping well, so I worked with my naturopath on some sleep supplements. Once I added in melatonin, I started to sleep better and feel more rested and a little energy started coming back. It was a happy day when i could get my own plate of food together (this is from already prepared food, not cooking it myself).

I have continued to feel more and more comfortable and be able to do more things, although I am not back to my baseline of 25%. I would say I'm about at 15%. I'm sleeping about 14 hours a day. I am guessing that I'm in some kind of healing phase right now, so I'm being very careful about pacing and not pushing things. I did a little trial of driving to the store for some stamps. This is the first time I've driven by myself since August. The whole trip was 15 minutes and believe me, that was plenty.

Sooooo......for anyone looking for advice on adrenals. I would suggest that if you want to do cortisol and DHEA supplementation that you keep retesting often to make sure things don't get too high. But I've researched things more since this episode and found out that we probably don't really have adrenal fatigue in the classic sense and probably have no business doing these kind of supplements.

According to Rich Vank, the problem lies upstream with the hypothalmus and pituitary, which don't have enough glutathione to make the signals the adrenals need to receive to do their job. In other words, the adrenals are perfectly fine, which is why if you try to supplement them directly you could make them go too high. Then once you stop supplementation they will eventually crash back down again.

I think this makes perfect sense in my case. I've done the testing and I do have a methylation cycle block. So when I get back to my baseline and am stable for awhile (maybe in 6 months?), I plan to work on methylation. I've already had some success with it on a small level. The problem will be balancing it with discontinuing meds especially the Zoloft, because once you start raising glutathione you will start making serotonin.

The one good thing that's come out of this (outside of a lot of spiritual growth) is that I currently have a normal day/night sleep schedule for the first time in years, which I'm enjoying very much. I would expect this to go away as my adrenals crash again, but maybe I will be happily surprised.

Click to expand...

Thanks for the update, i know where your coming from, its hard to balance these hormones for some of us. Im also one of those people who make too much cortisol from pregnenolone and very little dhea. The strange thing i have found about pregnenolone was that initially there is some really good effects but then it seems to overstimulate me too much. Im currently slowly working on getting my dhea levels up using very small doses, if and when i get them to normal then i may try again very low doses of pregnenolone, maybe its something that i need to dose every few days?? I wonder if the extra cortisol we get from preg helps lower our inflammation which is why we feel good from it initially but then the stimulation effects from cortisol then take over and mess us up. My doc has also said that we can have problems working these hormones out because of dysfunctions in the hypothalamus, which control our hormones. Its tricky. Also have similar problems with zoloft as well, anything stimulating actually.

Would you think acth value of
ACTH 13.85 pg/mL (5.00 60.00) is fine or low? (basal cortisol was normal)

Thanks.

Click to expand...

A one-time ACTH measurement is unlikely to give you much useful information as to the state of your adrenals unfortunately. It can vary a lot and that makes it hard to come to any sort of conclusions.

The same goes for a one-time cortisol reading. There is a big difference between "normal" and optimal in terms of AM cortisol but most doctors like to see it up near the top of the range. But there are many variables and simply being at a lab at 8AM for a stick (the best time to test cortisol as the level drops off rapidly afterwards) may lead to an increased level on that morning that is not representative of typical function.

If you are interested in measuring your adrenal function, I would consider doing a 4x day saliva cortisol test which will tell you how much free cortisol your body actually has to use across the entire day. This shows the rhythm as well as the amount of production and can give you and your doctor much useful information with which to build a treatment plan to support adrenals.

A one-time ACTH measurement is unlikely to give you much useful information as to the state of your adrenals unfortunately. It can vary a lot and that makes it hard to come to any sort of conclusions.

The same goes for a one-time cortisol reading. There is a big difference between "normal" and optimal in terms of AM cortisol but most doctors like to see it up near the top of the range. But there are many variables and simply being at a lab at 8AM for a stick (the best time to test cortisol as the level drops off rapidly afterwards) may lead to an increased level on that morning that is not representative of typical function.

If you are interested in measuring your adrenal function, I would consider doing a 4x day saliva cortisol test which will tell you how much free cortisol your body actually has to use across the entire day. This shows the rhythm as well as the amount of production and can give you and your doctor much useful information with which to build a treatment plan to support adrenals.

Click to expand...

Thanks for your answer Ema

Let me explain my situation more clearly. I had taken asi test about 10 years ago. I was on cortex extracts since than. Sometime after starting cortex extracts I recalled that I had about 9-10 months usage of dexamethasone injections with abrupt ending before going downhill. About 10 days ago I was able to stop all hormonal supplementation and now I wish to find out if the reason I went downhill was sudden ending of dexamethasone injections resulting in secondary or tertiary adrenal suppression. I do not have any endo at the moment and also do not have the energy to search for one..Today I had basal cortisol test. It was just above top limit even though sample was taken around 9:30 am. acth was as I had given at my previous post. sodium is 142 and potassium is 4.5.I also have given 24 hour urinary free cortisol test. Did not get the result yet. All I wish to know is to find out if I have adrenal insufficiency at clinical level. If the tests I take point to adrenal insufficiency at clinical level than I will bother for searching for a knowledgeable endo.Are there any other tests I should take to exclude clinical level AI?Thanks.

Let me explain my situation more clearly. I had taken asi test about 10 years ago. I was on cortex extracts since than. Sometime after starting cortex extracts I recalled that I had about 9-10 months usage of dexamethasone injections with abrupt ending before going downhill.

Today I had basal cortisol test. It was just above top limit even though sample was taken around 9:30 am. acth was as I had given at my previous post.

Click to expand...

High AM cortisol and low ACTH would point to a source of cortisol outside of normal adrenal production. This would most typically take the form of an adrenal tumor. But dex is a potent inhibitor of ACTH, so again I would not read too much into the results if you have not been off the hormones for very long.

Primary AI would typically look like low basal cortisol with a high ACTH level. Hypopituitary (or secondary AI) would have a low basal cortisol and a low ACTH.

Are there any other tests I should take to exclude clinical level AI?Thanks.

Click to expand...

The typical diagnostic test for AI is the ACTH stimulation test. It is very good at detecting primary AI however it misses almost half of those with secondary AI. It's a good place to start though you may have trouble getting anyone to order it with a high AM cortisol level. But a lot depends on how long you have been off the steroids prior to testing too...

I would personally still do a saliva cortisol test. If low across the board, a stim test would definitely be warranted.

I had dex injections about 14 years ago(I have CFS symptoms since 23 years). I had them for about 9-10 months and than I stopped them abruptly.Than my symptoms got worse and within 2 years time I was bedridden. That was when I took ASI test and started cortex extracts.I did not knew importance of dex injections at that time.

Yes, I weaned down my hormonal supplementation, Otherwise I would not be able to do it.

you said:High AM cortisol and low ACTH would point to a source of cortisol outside of normal adrenal production.

Would you consider my acth level as low even if though is in limits?I mean is it low enough to consider secondary or tertiary AI?Yes, I think we excluded primary AI with this level of ACTH.Yes, I agree that it might be difficult for me to order ACTH stim test with this basal cortisol level. I also know that it might be hard on adrenals for AF person. So, I do not wish to have it unless I have to.Thanks and best wishes.

I'm glad you asked that question because I have realized that I really don't know why other than that I have read that about the urine test!

I've gone back to the pages where I read it but it doesn't offer any other information and I haven't been able to find anything anywhere else. The only thing I can surmise is that it doesn't offer any information about how the adrenals might produce or not when stimulated which is a crucial part of the adrenal insufficiency diagnosis. I'll keep my eyes out and see if I can find anything else more solid.

I agree that the urine result is low. It's contradictory with your AM cortisol reading. But either way, I don't see any way around further testing - either an ACTH stim test which will also re-do your basal cortisol prior to the ACTH (just in case there was an error) and a saliva cortisol test to show the production across the day to see if the rhythm is optimal.